Does anyone know anything about Over active Parathyroid??? (Hyper calcium)

[micksal]

I have just been diagnosed and would like to know the symptoms to compare - having great problems at moment with something and wondered if anyone else is the same

[Hidden]

You must look at this website, it's excellent:

parathyroid.com/

[micksal in reply to Hidden]

I think I have but got told by my surgeon not to believe everything you read which didn't help!!!! thanks for reply

[Moggie]

Also this

stopthethyroidmadness.com/p...

Moggie x

[micksal in reply to Moggie]

OK will do thank you - I have also sent an e mail to a top Eurocrine surgeon in Harley street with what is going on not thinking I would get a reply and lo and behold he replied with 20 mins asking for my number and is going to ring me today can't believe it!!! Just hope he can answer my questions!!

[waveylines]

I was diagnosed with this as 'Secondary' this meant that it was due a severe low level of vit D -good treatment with vit D3 corrected this for me. Is yours Secondary or Primary?

[micksal in reply to waveylines]

I don't know is answer - I have 'slightly elevated calcium' levels in blood and at present waiting for a ultrasound scan and another scan of some sort which I don't know what it is and then back to surgeon and guess when not until 29 May!!!!! Its rediculous!!! other problem I also have is am having a back operation next thursday and have been in A and E yesterday for severe head pains which have had 3 episodes in a week!!!! was given some strong painkillers which killed pain this morning thank god but am desperate to find out if this is connected with the parathyroid problem because I think it is and if so, need to bring forward seeing surgeon which as you prob know is practically impossible unless you go private which I am seriously thinking of!!!! (I shouldn't have to though have always paid my way and stamp and never claimed a thing from government !!!!!!)

thanks for your reply

[bantam12 in reply to micksal]

How high are your pth and calcium? The other scan will be a sestamibi scan which is done in nuclear medicine department.

Headaches can be a symptom along with a whole load of others.

Have you had a bone scan or kidney scan yet to see if you have osteopenia or kidney stones?

[micksal in reply to bantam12]

Hello thanks for this - I don't know my PTH but calcium is 2.7 (which is something like 12 maybe????) I am due to have a ultra sound on neck and another scan (haven't had letter yet but its on its way) Because its only just been diagnosed I don't know when these scans are but next appointment is May 29th which I think is rediculous - the headaches are the things which is scaring me the most as never had pain like it before and am sure its something to do with this condition

Yes I am having surgery - he put that on form but needs these scans first which I know is obvious as he needs to know which one or more is not working properly but I have been feeling so down/unwell in last year I want it done asap - apart from paying I suppose I must wait

[bantam12 in reply to micksal]

I would get hold of your results if you can, your GP should have them. Were you diagnosed by an Endocrinologist or GP ? hopefully they haven't diagnosed you on just one high calcium result as there is a lot more to it than that.

I have been having tests for the last 6 months and have low VitD, high calcium, pth and liver function, kidney stones and osteopenia and it's that combination that got my diagnosis.

It is a long slow process but I think May is a long time to wait. I saw my Endo privately but I will be having the surgery done on the NHS, cost to do it privately was huge.

Have a look at the pth forum I mentioned ( assuming you can access it ) there is a lot of first hand experience on there from people going through the same thing,

there aren't that many members as it's a fairly rare problem but the info is good.

[waveylines in reply to micksal]

If it is secondary it should state it on your copy of the specialists letter to your GP. I had high level of PTH. Turns out my body was leaching calcium out of my bones due to the vit D being more or less absent. my bone scan showed i had a low bone density -which once given very high levels of vit D3 and extra calcium a year later was back in range -I was very lucky I know.. Hope you get sorted.

[bantam12 in reply to waveylines]

Your calcium would have been low/normal in secondary hpth waveylines, Micksal has high calcium so assuming his pth is high as well then it's primary hpth. Vit D supplements just send the calcium higher so not the answer although we have to take some to prevent hungry bone syndrome post surgery.

[waveylines in reply to bantam12]

Thanks hypohen. -mine was definitely secondary - & I can't remember what the calcium level was -but clearly was not the same as Micksal. Am sure your support to her/him is much appreciated. Sorry Micksal I hope I didn't cause confusion

[bantam12 in reply to waveylines]

pth disease is a bit of a minefield, there are 3 different types and sorting out which is what is a long old job, requires loads of tests. I'm not sure if I have any blood left the amount I have had taken in the last 6 months !

Glad to hear you are now over it, I would prefer to have had secondary rather than primary, having already had thyroid surgery a second lot is not going to be easy, ho hum.

All the best, stay well.

[micksal in reply to bantam12]

LOL - Not laughing at reply just that you have assumed and quite rightly how I have done my user name that I am a man - actually I am the SAL part of the user name - my husband is Mick!

[bantam12 in reply to waveylines]

I have primary hyperparathyroidism, what is it you want to know? I belong to a very good UK parathyroid group but unfortunately at the moment they cannot take new members as the chap who runs it has gone awol and no one else is able to do the admin. You can I believe still read the posts parathyroid-forum.co.uk

Dr Normans site is a good source of information but he does tend to simplify things, as I'm sure you have found out it's not as straight forward as he make out. A few people from the forum have or are having there surgery in his clinic.

Are you heading toward surgery? If so whereabouts are you going? You need an experienced parathyroid surgeon for this.

Shout if I can help with any questions you want answered, I will do my best.

[micksal in reply to bantam12]

Yes I think mine is definately primary although to date haven't had a letter which states this only saw 'hypercalcium' on a letter sent to my GP. The main problem with me at present is the bad heads I am getting which are so bad until the tablets I have kicks in - I am hoping that it is because otherwise I will have some other problem to worry about. The surgeon I have seen has put me down to have surgery but god knows when am not due to see him again until 29 May which is a joke but unless I go private have no choice. I have also been referred to have 2 scans one is ultra sound and not sure of other but of course that will prob be weeks!!! However as I am having a back operation next week it may not be a bad thing BUT I still am going to try and get my GP to push it forward a bit.

I live in Suffolk and am going to Ipswich Hospital - I have actually e mailed a top Harley Street Surgeon to get advice and unbelievably he replied to me this morning and asked for my pone number so he could chat to me which surprised me greatly! To date however he hasn't rung yet but I appreciate he must be a very busy man.

Thanks everso for your help and its nice to know I am not along in this and think I am going mad!!!!

[bantam12 in reply to micksal]

Hi Sal

If you are down for pth surgery then it is primary as the other 2 types don't require surgery. If the scans are for locating the adenoma then the other is most likely a sestamibi scan, easier for you to google it than me to explain the procedure. Or the scans maybe for bone and kidney if you haven't had them done yet.

It is a long process, some on the pth forum have waited years to get a diagnosis so I count myself lucky it has only been 6 months to get where I am now.

Headaches are a symptom so it could be the cause but then again may not be, we all seem to get different symptoms that come and go which makes diagnosis tricky.

Is your Vit D very low ? that is what started me off on this journey of discovery, I can't take Vit D supplements as it sends my calcium even higher, bit of a problem as you need to up the level before surgery.

I hope you get some info from the private doc, if he remembers to phone !